ERS Congress overview: ELF Patient Organisation Networking Day 2018

On the first day of this year’s European Respiratory Society (ERS) International Congress 2018, we held our annual Patient Organisation Networking Day. This event, the third of its kind, is becoming a firm fixture for patients attending the Congress.

‘Partners in learning: challenging the culture of medical and patient education’ was the theme for this year’s event, which brought together over 80 patient organisation representatives and healthcare professionals to share ideas on this theme through presentations, posters and discussions.

We heard about some interesting initiatives from patient organisations, including:

  • An app for young people with asthma in Italy
  • An exercise learning exchange between Norway and Ukraine for people with pulmonary hypertension
  • A co-lecturing patient-professional partnership in the Netherlands
  • A nurse helpline for people with sarcoidosis in the UK

There were also over 20 posters on display from patient organisations detailing their projects, activities and research which highlighted the wealth of expertise within the room.

Annie Descoteaux, project manager at the Patient Partnership Unit in the Faculty of Medicine at the University of Montreal, spoke about patients as educators and how their model has evolved to include over 200 patient educators as part of training for medical students.

Professor Daiana Stolz, ERS Education Committee Chair, spoke about the value of continuing education for healthcare professionals and posed an important question about how patients can help them to improve their communication skills. The roundtable discussions which followed raised other important issues including: the role of the patient in preparing for appointments, building awareness in schools to avoid exclusion of students with chronic health conditions and the growing role of telemedicine, which brings both concerns and opportunities for patients.

Local patient organisation FFAAIR opened and closed the event with a fun quiz and singing activity. Professors Mina Gaga and Tobias Welte – ERS President and ERS President-Elect, respectively – also joined the event to express their gratitude for the input of patients and patient organisations into the work of ERS.

Thank you to everyone that participated in this year’s event – and for your fantastic contributions. We will publish a more detailed report of the event and its outcomes in a forthcoming newsletter.

Download full report of the Patient Organisation Networking Day

Download the presentations:
Patients as educators (Montreal University) – Annie Descoteaux
Fight Asthma – an app for teenagers – Nona Evghenie
SarcoidosisUK nurse helpline – Jack Richardson
PH learning exchange Norway-Ukraine – Uliana Malofii
Teaching first year medical students together  – Mr Huub Kooijman and Dr Marlies Wijsenbeek
Continuing professional education for professionals – Dr Daiana Stolz

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